The life and times of a pituitary Cushing's survivor (1987) AND a kidney cancer (Renal Cell Carcinoma) survivor (2006). I must be a Super-Woman...NOT!

Wednesday, July 2, 2008

Golden Oldies - Posts from the Past - Part 2

From November 17, 2006:

Catching Up With The Cancer

Since I had surgery for kidney cancer May 9, 2006, I've been looking around for somewhere to read and talk about this with other survivors (hopefully!) I haven't found anyplace I'd like to visit or feel comfortable with yet, so I decided to make a new blog here.

I'm sure that my recovery will be much the same as for any other major abdominal surgery, although I'd like it to be faster.

Before my surgery, I didn't have time really to consider that I had cancer, and what it meant for my life. There was no going from doctor to doctor, running a different test each week, suspecting that maybe... Just boom, there it is. Cancer.

Now that I'm about 6 months post-op, I'm thinking more and more about this and how it might affect my future. I know that there are going to be lots of scans, every 3 months, just to be sure that there wasn't a cell hiding out.

I know I have to be careful with meds - no NSAIDs so my arthritis is worse. I can no longer take hGH (recombinant growth hormone by daily injection, due to panhypopituitarism) even though I'm deficient. In 5 years (if I survive!) I can take the GH again, supposedly.

I'm supposed to be eating less protein, more fruits/veggies, drinking more water.

And I'm supposed to avoid playing football and other things that might damage my remaining kidney.

Normally, I know how very lucky I am. I just reread the path reports and know that the tumor was already hemorrhaging around the borders and the cysts contained hemorrhagic fluid. Things could be much worse.

Sometimes, at night when I can't sleep, I wonder why I was lucky like this. What haven't I done with my life that I should. Seems to me that I've accomplished what I should already.

And, in the night, I worry about the cancer returning, taking my other kidney or worse.

At this time, there's no standard chemo unless it's metastasized, although there are some promising clinical trials. Radiation doesn't seem to work for this kind of cancer, so if it returns it's more surgery.

From my past posts:

First off, I'd like to thank you all for your good wishes, support and prayers. I could do the Sally Field thing and say "...and I can't deny the fact that you like me, right now, you like me!" but I won't.

I plan to print everything out and take it with me to the hospital as a cheery-upper.

Alice has been such a wonderful friend through all this, calling, checking up on me, keeping all of you updated on things as they are known right now. Her support and love has been such a wonderful blessing in my life, especially now.

As it is, I'm currently feeling "normal" whatever that is. If I didn't know I had a problem, I would think that I was just fine.

I am fortunate that I found this out before the tumor could grow any larger. I am fortunate that I was close to the ER, not driving home from Baltimore, or in Baltimore, Oklahoma or on the cruise.

I know that the tumor has been growing for quite a while - it's very large. I saw the MRI images and even I can tell that it's not normal. As far as I know now, all the other scans have been fine. I had an abdomen CT, chest CT, brain MRI, chest/abdomen MRI and a full body bone scan.

When I was in the ER Friday, they assumed that it was a kidney stone and did the first abdominal CT scan looking to see where that was. They came back with the news that yes, I had a kidney stone but that it was the least of my worries at them moment. So, I was admitted to the hospital and had all the other scans except the bone scan. Knowing what I know now, it would have been better and easier for me to have had the bone scan as an inpatient. As soon as I checked out and was out of the system, it was harder to get an "emergency" (not scheduled weeks in advance) bone scan. Oh, well.

My surgery will be next Tuesday, May 9, at 9:30AM at Fairfax Hospital ( http://www.inova.org/inovapublic.srt/ifh/index.jsp ). I'm expected to stay there for 3-5 days post op and they don't anticipate any pesky complications like chemo or radiation at this time.

For now, I'm keeping my normal schedule, avoiding reading horror stories online, eating, sleeping - even napping! - as usual. Sometimes I even forget that I have this little medical appointment next week.

For a non-phone person I've talked with so many people these last few days, it's mind-boggling.

I'm happy to report that all is not lost on the cruise. Someone will replace me - and there will be another cruise later in the year. YEA! My main "concern" on that now is that I'll lose weight (finally!) post-op and my cruisewear will no longer fit. Yeah, right.

In thinking back, I think it's a good thing that my arginine test was messed up in Sept of 05. If it hadn't been, I wouldn't have redone it on Thursday. I believe that having that stuff in my body was what made my kidneys rebel and act up on Friday. So, without the lab screw-up I might not have known anything for a long time.

So, it's all good.

Thanks to everyone who has called and posted such wonderful things. I cannot begin to imagine what my email looks like...

and

June 12, 2006 post-op:

Thank you all for your prayers, good wishes, cards, phone calls, gifts, general "cheery-uppers". They all really helped me on my road to recovery.

I do have a ton of thank you cards to send out to lots of people - I'm very slow at that sad.gif Under normal circumstances my handwriting is terrible. Now, post-op kidney cancer, I can no longer take my arthritis meds or any NSAIDs and my writing will probably be even worse.

I am very nearly better, not much pain anymore, a nasty big scar and my energy levels aren't so great. Of course, they were awful before. I can no longer take the GH even though I'm deficient. In 5 years (if I survive!) I can take the GH again, supposedly.

I've had a lot of time to do a lot of thinking over the last 6 weeks. I know I was extraordinarily lucky to have my tumor discovered before it was too late. The lab reports and my surgeon reported that it would only have been a week or so before the tumor had hemorrhaged and caused major problems. Thank goodness the argenine retest for GH had caused me to bleed - at least I think that's what set it off. If I hadn't had all the blood and pain for one day only, I'd have had no clue that I had this cancer and who knows what would have happened in that next week.

I will be getting CT scans every 3 months for awhile to be sure that there is no cancer hiding out.

I plan to keep a kidney cancer journal of sorts in here, so years from now I can look back and laugh and wonder why in the world I was so worried.

I went to see my Johns Hopkins endo again last week. He doesn't "think" that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have.

He was happy to see that I had lost 22 pounds since my last 6 month visit. Not all of that was from surgery! He reminded me that I can take more cortisone, but I hate to do that because I gain weight so fast when I take more.

He thought that my blood pressure was low - for me, not for "normal" people. He took my pressure several times, lying down, getting up quickly. But I never got dizzy. Maybe my pressure increase was temporary when the cancer started. All these mysteries I have that no one can answer.

My energy levels are lower than when I was on GH, and they're lower again because I had the adrenal removed, because of my panhypopit, because of my cancer (even though currently NED, it can come back at any time, because of my GH deficiency...

Every day is a challenge getting up, doing something useful, doing something without arthritic pain and weakness, having the energy to finish even something "easy". I'm starting to get very depressed over all this.

If this is the way the rest of my life is going to be, why bother?

People mostly assume that everything is OK with me because I am not getting chemo or radiation and because I look so "healthy" (thanks to the Cushing's/daily Cortef!). They figure that if there was any real danger of the cancer metasticizing that I would be on chemo, like other cancer patients do.

They don't understand that I have to wait and pray because there are no approved ajuvant treatments. If/when my cancer returns, it's just more surgery. If I'm "lucky" enough and get to a stage 4 THEN I can have chemo/radiation as a pallative measure.

Aarrggh! Do I see starting a kidney cancer support group in my future?

About Me

I am a Cushing's patient who has dealt with Cushing's symptoms since 1983 (or earlier) and the aftereffects of pituitary surgery since 1987.

Because I had very little support for my symptoms, diagnosis and surgery, I decided to try to make things a little better for other patients and started a support site called Cushing's Help and Support in 2000. The site has grown to astronomical numbers. This disease isn't as rare as doctors have told us!

In 2006, I was also diagnosed with kidney cancer (renal cell carcinoma). My left kidney and adrenal gland were removed. Having an adrenal gland removed complicates my post-Cushing's symptoms.